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9.8.18

When your Lung gives up...

It's nice to be writing to you all, I mean really, really nice as I genuinely thought I potentially may not. "Why?" I hear you cry, well I have had a busy two weeks of dealing with this crappy old body of mine as my left lung decided it wanted to collapse, go you body lol.

It was a boiling hot Sunday of the 29th of July 2018 and I woke up complaining of the weather as I have been doing religiously during this heatwave, so not a particularly unusual start but I got up, came downstairs and went for the loo and then walked back into our living room when my chest just sort of felt really, really heavy and full like someone had filled it with fluid or concrete or something. It was super hard to breathe my chest just didn't seem to want to expand or it hurt to breathe out so me being me I just assumed I had pulled a muscle or I just had fluid going on so I decided to see if the feeling would pass because a lot of times with me I just need to have rest and give things time and they eventually pass but I was feeling more off than usual and I was super anxious so much so that I had to call Mark away from his friends which I NEVER do! We did give it time but by about 3/4pm we decided it was probably time to give someone a ring.

We initially rang my hospice care to see what they thought and because its a weekend you obviously get less services available but they suggested we ring 111 which we maybe normally wouldn't do but because it was a Sunday and Norwich had just had their Pride day so a&e was going to be busy we really wanted to avoid that if necessary so we rang 111 who assured us a GP would be out to us "within a couple of hours." I thought 'okay, I can wait a few hours...' at this point still thinking i've only pulled something although breathing definitely more laboured at this point. We waited 7/8 hours for a GP which I think in anyones book is unreasonable! I understand our services are stretched but if I had rung an ambulance I would have been seen immediately due to my heart and lung issues and I'm unsure as to why this wasn't the case when it came to the 111 services. A GP and I use the term GP loosely, appeared at around midnight, I'm unsure this man could have diagnosed a cold if i'm honest. He listened to my chest and took my BP and that was it and said "I don't know, go to A&E" EXCUSE ME?! Not a thing about what my chest sounded like, no opinion on anything for me to make an informed decision for myself. He didn't even tell me that my left lung sounded quiet which it most definitely would have done. It was a bewildering experience, Me and Mark managed to get rid of him and then decided as much as I was reluctant that it was best to go to A&E sooner rather than later, so off we toddled, so sure I was that I had only pulled something we didn't even take anything with us, which is so unlike me LOL.

We turned up at A&E at the Norwich and Norfolk hospital and I cannot credit them enough they really were fantastic with me. We got to the waiting room where we told the woman our story;- transplant, can't wait in a room full of people due to immunosuppression, only a quarter tank of oxygen left, wait 8hrs for a GP etc. and the lovely receptionist went straight to nurses who called us through to triage immediately and we were on the A&E majors wards within 10/15minutes. Here is where we discovered I had a collapsed lung and was moved to Resus just in case and put on 15litres of oxygen. We we were eventually moved to their Respiratory ward by 7am and at this point me and Mark were exhausted! We had been up for about 24 hours with no sleep as sleep in A&E was impossible, the best you could do was close your eyes and hope you were resting a little. When were finally on the Respiratory ward and everyone had spoken to the relevant doctors, as N&N were keen to make sure they were doing everything by Papworths books, things happened fairly swiftly.

I officially have experienced my WORST procedure to date lol. Now up until this point I have always said my worst procedure thing I've had done to me is the drain removal post transplant as that really was quite horrendous for me but having a drain put in really has taken over that for me. I wasn't allowed any pain relief or anaesthetic and I genuinely never want to have that done again it hurt so much, I swore and shouted and screamed my head off when it was going in and poor Marks hand I can't imagine what I did to it. That being said the relief really was immediate, it was like a gush of air just suddenly entering my body and like I had been holding my breathe without knowing it and that was an amazing feeling and actually probably worth the pain just to be able to breathe (albeit on my 20% Lung Function lol.)

Right so now I'm all drained up and sorted in that regard we just had to give my lung time to heal itself and see if it had re-inflated. A normal person lungs takes only a few days to do so but it's hard to tell with someone like me as my lungs are so damaged so it was one big wait and see game which i was happy to play as I was in no rush to get out as I wanted to make sure everything was okay too. After a few days I was only left with between 10-40ml of air leaking from my lung but x-rays had shown that my lung was properly re-inflated so we didn't know where this air was coming from and meant I could have a possible leak which would have complicated matters. N&N did everything impeccably but unfortunately nothing was really going to get done until I got to Papworth where they could actually make decisions and get stuff done we were just waiting for a bed. Papworth had a bed for me ready and eventually I got there Saturday 5th August I won't go into the drama of transport though LOL. At this point we really dd just have to wait and see if I stopped "leaking" which I seemed to eventually but we were all being very cautious because we didn't want to remove the drain and then find that my lung just decided to deflate again. So we decided to clamp off the drain for 4 hours to see if my lung decided to do anything and if it didn't we would do another x-ray make sure the lung is still looking good and then hopefully remove the drain.

On Tuesday 7th It was the day! I finally had the drain removed and miracle beyond miracle my lung decided to behave! Yay!

Now what does this mean in the long run and why did it happen in the first place?

The reason it happen in the first place is firstly my lungs are SHITE, utter total shite, they are beyond damaged! End of. They are continually getting worse the longer time goes on and thats just a fact, deterioration is just a fact of Chronic rejection and ultimately they're is no stopping it. Pre collapsed lung however Papworth had discovered a very minor and small pneumothorax which is a pocket of air in the lung which they had decided to let be, but this may have contributed to the lung collapsing but in a CT scan I had done we discovered lots of little Polyps which are also little pockets of air in the lungs but little ones dotted around the place and one of those potentially could have popped creating the lung collapse. This can happen from coughing too hard, breathing too hard, physio, a bump to the chest, so really minor things can do it which is worrying for me really because some of these I physcially am unable to stop from happening :-/.

The plan from now really is to rest, A LOT, the overall recovery time for a "normal" person with a collapsed lung is 6-8weeks so obviously I'm just going to have to be careful for longer but the initially first few weeks are vital! I've been told this probably aka more than likelyWILLhappen again. It wasn't what I wanted to hear but it was not a surprise. If my lung had not have re-inflated the way they wanted the next step was seeing if it was a leak that needed fixing and if that wasn't the case Glue was the next step! So if my lung decide to collapse again we may end up having to Glue it and my Dr has already pre-warned me that it is not the most pleasant of processes so I cannot wait for that experience! (dripping with sarcasm)

So we have a plan or at least an outline of a plan for when this happens again and at least I'm more prepared should this happen again. It has been a very difficult admission for me because I do always feel as though I'm teetering on the edge of cliff all the time and as someone who suffers from vertigo trust me it's not that pleasant! Death is forever at the forefront of my life, not always acknowledged but definitely always there. Whilst at Papworth I was very aware of the fact that this is the place that I'm probably going to die and where a lot of my friends have died and that certainly did not go unnoticed, I felt very mournful whilst I was there because it's not like I ever leave the hospital "well" I leave with a patch up hoping that it sticks for a little while and that's my reality but certainly a sad reality.

Regardless of that I am certainly thrilled to be home even if it is on strict rest as I'm so happy to see my Little Baby Marizuki! It was torture for meant seeing him, I was so afraid he would forget me so Mark was face timing me with him everyday. I know it's silly but it's little things like that, that really keep you going and I really just wanted my baby. I'm so pleased to be home just so Mark can get a bit of a "rest" as well as he's be driving up to the hospitals everyday and spending all day with me and in this weather is has been quite yucky and I'm boring in hospital as I sleep quite a lot so I'm just happy that we can both get on with our life again. Hospital really does just press a massive pause on life so yay to home!

I hope you have all been well during these past few weeks and will write again soon :-D

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I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.

This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.